I'm sure you recall the post we featured just before Christmas to welcome baby Porter to the world. Kara has Down's syndrome, her parents knew before she was born and sent this nervous message brimming with love to all their friends and family to tell them of her imminent arrival.
2 months on and Mum Sara has shared how life is for them. She's tired, has baby brain, is constantly feeding, going to baby groups, meeting other Mums, swapping stories... Oh, wait a minute... just like any other mum in the land!
Kara sleeping soundly |
Once, twice, three times
it’s a baby!
Hello again, excuse
any mistakes but I did not get much sleep and unless its singing nursery rhymes
or quoting Julia Donaldson the brain does not work. Kara is now two months and
thriving – literally growing, feeding, and now smiling (probably wind).
I wish I could say we
have been doing exciting trips but life is very normal. I think this is a point
I would emphasise – we go to soft play, battle with the pram and buggy board,
listen to the Gruffalo and go to the library. I also sometimes go out and chat
with friends minus children – although we only talk about the children. If I could clone another pair of arms I might
get everything done but any Mum with two children under four is going to say
this.
Kara is a baby who has
an extra copy of the smallest human chromosome – women have an extra bit of
chromosomes hence the XX – men have less hence the XY. She looks and is a baby.
No one makes any comment on Kara unless to say” isn’t she cute?” and “You forget how small they are ?”. Once I
explain the condition you get two reactions – one of “OK and so how are you?”and
the more common and very British “I know someone which has Downs”. It’s quite
funny and exactly how I would react. I have a friend who has twins and we swop the
stories.
I am still adjusting
to the NHS. I think it is like the legal or education system – you need to
accept and adjust to its idiosyncratic way of working. I have become more
forceful and I have explained that Kara is my child and that we will ask for
support if and when we need it. There seems to be a need to over inform – you
will as all parents find your way and like all advice take what you want and
leave the rest. You do have to fight for what and how you want to be treated.
Everything offered is a service and not compulsory.
Are we happy – Oh
yes. Do we feel any different from any
other parents – absolutely not.
"On the subject of medical appointments,
am I the only one who feels the need to dress to be taken seriously?
I don't quite don shoulder pads, but it's not far off!"
- Hayley
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